National Ethics Teleconference
Highlights from the American Society for Bioethics and Humanities (ASBH) 2004 Annual Meeting
November 17, 2004
INTRODUCTION
Dr. Berkowitz:
Good day everyone. This is Ken Berkowitz. I am the Chief of the Ethics Consultation Service at the VHANationalCenter for Ethics in Health Care and a physician at the VA NY Harbor Healthcare System. I am very pleased to welcome you all to today's National Ethics Teleconference. By sponsoring this series of calls, the Center provides an opportunity for regular education and open discussion of ethical concerns relevant to VHA. Each call features an educational presentation on an interesting ethics topic followed by an open, moderated discussion of that topic. After the discussion, we reserve the last few minutes of each call for our 'from the field section'. This will be your opportunity to speak up and let us know what is on your mind regarding ethics related topics other than the focus of today's call.
ANNOUNCEMENTS
Remember, CE credits are available for listeners of this call. To get yours, go to the EES Online Learning web site.There is a link on our web site and it will be provided in the follow-up announcement.
At this time, I’d also like to mention that the NationalCenter for Ethics in Health Care has drafted a national guidance on ethics consultation in VHA.All EAC chairs and VISN POCS should have received notification of this.Comments are due by 11/22/04.Anyone interested should visit the Center’s website and follow the link as soon as possible.
PRESENTATION
Dr. Berkowitz:
Today’s presentation will focus on highlights from the American Society for Bioethics and Humanities (ASBH) 2004 Annual Meeting.We chose this topic because we thought it was important to inform our VHA ethics community about the greater ethics community. The annual meeting of the American Society of Bioethics and Humanities bills itself as an arena for interdisciplinary exchange among professionals in the fields of bioethics and the medical humanities. We speculate that many of you are not able to travel to national ethics meetings so we decided to spread the word about some of the issues that were discussed and are relevant to VHA.
Joining me on today’s call is
Art Derse, MD, Chair, National Ethics Committee and President, American Society for Bioethics and Humanities (ASBH)
Ellen Fox, MD, Director, NationalCenter for Ethics in Health Care
Angela Prudhomme, JD, Chief, Ethics Policy Service, NationalCenter for Ethics in Health Care
Bette Crigger, PhD, Chief, Communications Service, NationalCenter for Ethics in Health Care
and
Barbara Chanko, MBA, RN, Program Specialist, Ethics Consultation Service, NationalCenter for Ethics in Health Care.
Thank you all for being on the call today.I would like to start by asking Dr. Derse to give us an introduction about the American Society for Bioethics and Humanities.
Dr. Derse:
Sure Ken, I’d be happy to. I’m actually very excited because I am the seventh president of ASBH, and I am the first one to have an appointment at the VA. I think that is extremely important for us, at the VA, to be involved with ASBH, and for people at ASBH to know about us, because of our position as the largest and most successful health care system in the United States, and also because of the progress that we’ve made as an ethics committee, as an Ethics Center with the National Center for Ethics in Health Care. I think that interchange is very important.
For those who do not know about ASBH, it is a multi-disciplinary non-profit organization that is dedicated to promoting an exchange of ideas and fostering multi-disciplinary, inter-disciplinary, and inter-professional scholarship, research, teaching, policy development, professional development, and collegiality among people who are engaged in all the endeavors related to clinical and academic bioethics, and the health care related humanities. This is a very interesting group. We have people who do ethics consultations, we have people who are ethics committee chairs, and ethics committee members. We have people who teach, or are interested in, the medical humanities—humanities that touch on the profession of medicine. It is a great organization, one that I am proud to be a member of, and proud to represent, in part, the VA. At this conference, other people from the VA were there, both participating in and attending sessions. ASBH is actually going to be meeting in Washington, DC next year. We’re going to meet October 20-23, 2005. People who are in the Washington area, or people who are interested in going to this meeting should think about coming to it, or learning more about our organization, which is at Our interchange among our colleagues in bioethics and our colleagues in humanities has been very enriching for me, and I know that other people who are on VHA’s National Ethics Committee, and other people who are ethics committee chairs, and people who are doing ethics consultation at the VA have benefited from not only their interaction with the organization, but a document that was published about seven years ago which set out the core competencies for ethics consultation, and now with the new document that is being developed on ethics consultation here at the VA, think it is a very important step, and one that ASBH members will be happy to learn about as well.
VHA is very important, and it is important for people in the bioethics community to know about us, and for them to be able to tell us what they are thinking and what’s new with them. Many of our colleagues are in private medical schools, and in the private health care system, and it is good to have an interchange with them, because many of our trainees move from the world of VHA to private medical enterprise. It is good to have a conversation with the people who are teaching them ethics and humanities.
Dr. Berkowitz:
Thank you Dr. Derse for that introduction to ASBH and for discussing its importance to VHA. Now I’d like ask Dr. Ellen Fox to discuss VHA’s involvement in the conference.
Dr. Fox:
Sure, Ken.
One thing we did was we posted an official “call for comments” on a document we recently draftedon how to perform ethics consultation.We invited people to volunteer to be external reviewers of this document, and provide comments.So far we have over twenty colleagues from ASBH who have volunteered to serve as reviewers.
We also used the ASBH meeting as an opportunity to get the word out about the Center and what it does—so we talked about our major projects, and made it known that we expect to have one or more job openings in the near future. Several of our staff were approached by people who were actively exploring career options, and gave them some insights into what it’s like to work for the Federal government, and for the NationalCenter for Ethics in Health Care.
We also participated in the formal agenda, with several members of our staff leading sessions.Our own Ken Berkowitz and Barbara Chanko conducted a very interesting session entitled, “Electronic Tracking of Consultations:A Quality-Improvement Database Software Tool for Ethics Consultation” which focused on our Center’s plan to develop a secure, web-based software program that will help VHA facilities document, evaluate, and report on their ethics consultation activities.
Bob Pearlman, who heads the NationalCenter’s Seattle office, led a very helpful lunch-and-learn session on evaluation of health care ethics – targeted especially to young professionals just entering the field.
And I participated as a faculty member in another career development workshop on how to find and negotiate a job in bioethics.
A number of other members of our NationalCenter staff attended the meeting as wellto take advantage of continuing education opportunities, network with colleagues who share common interests, and stay in touch with goings on in the health care ethics community outside of VHA. Our staff met and interacted with people from across the country who are professionally involved in bioethics, many of whom are in some way affiliated with VHA.
I’d like to make one final observation.I’ve been attending these meetings for a number of years, and it’s been great to see that VHA is being increasingly recognized as an important player on the national scene. And with Art Derse as the organization’s President, and the meeting being held in Washington, DC next fall, I have no doubt this trend will continue next year.
Dr. Berkowitz:
Thank you Dr. Fox.Now I’d like to give EthicsCenter staff the opportunity to highlight a few of the sessions they attended during the ASBH conference.
I’d like to ask Dr. Bette Crigger to begin by giving us an overview of a session she attended.
Dr. Crigger:
One of the sessions I made a point of attending focused on “communicating with patients.”Several interesting papers were presented,but I was particularly intrigued by a presentation by Mary Catherine Beach from Johns Hopkins on a study she and colleagues recently completed about patients’ perspectives on respect and autonomy in the clinical setting.
Briefly, the study – which was a telephone survey with both multiple choice and open-ended questions conducted among more than 6,000 participants nationwide – asked whether patients perceived/experienced differences between being respected as persons and treated with dignity by clinicians, and having clinicians respect their autonomy to make decisions about their own care.The study was designed to test two hypotheses: (1) that both respect for autonomy and respect for persons were related to positive outcomes from patients’ perspectives, and (2) that respect for persons might be more important for minority patients in being related to positive outcome.The conceptual framework underlying the study was the Kantian notion of respect for persons, i.e., recognition that all persons have unconditional worth (or dignity), and what Beauchamp & Childress identify as the “mid level principle” in bioethics of respect for autonomy.
Questions designed to elicit patients’ experiences of being respected as autonomous decisions makers asked whether their doctors involved them in decisions about care to the degree they themselves wanted to be involved – e.g., were they involved in decisions more often or less often than they wanted.Questions about the importance of respect for persons in their experience asked how much patients felt clinicians treated them with dignity.
The outcome variables at stake were defined as trust, satisfaction, adherence to their physician’s recommendations, and whether patients received optimal preventive care.Respondents were asked, for example, how much trust they had in the clinicians who treated them, how satisfied they were with the quality of care they’d received over the last 2 years, and whether there’d been a time in the past 2 years when the hadn’t followed clinicians’ advice.Questions about preventive care focused on Pap smears, mammograms, cholesterol screening, and screening for colorectal cancer.
Most of the respondents were women, and were white, but a substantial number of African-Americans, Latinos, and Asians participated as well.
Just to give you a very brief summary of their findings:
For all patients, those who felt they had been treated with dignity were considerably more likely to say they trusted their clinicians than patients who didn’t feel they’d been treated with dignity.The same was true for being involved in decision making – patients who felt they had been involved in the ways they wanted reported having more trust than patients who didn’t feel they’d been involved in decisions.That was also the case for satisfaction with quality of care.There weren’t observable differences between white and minority patients on these variables.
But with respect to adherence to treatment plans or recommendations there were some interesting differences.Overall, for white patients there wasn’t a link between adherence and being treated with dignity, while being involved in decision making was linked to adherence.
For minority patients, pretty much the opposite was true: being treated with dignity was significant for adherence, but being involved in decision wasn’t.
For all patients, being treated with dignity was weakly associated with receiving optimal preventive care, but there was no association between preventive care and having a role in decision making.
These findings have some interesting implications for bioethics – and I guess here I should remind you that my background is in anthropology and linguistics, and I look at bioethics through those lenses.I’ve long thought that bioethics needs to do a better job of assuring that its concepts and values make sense in ways that patients or clinicians can most readily understand.If you will, the message has to suit the audience, not cling to a philosophically pristine formulation.But to do that, bioethics also needs to understand how patients experience the factors it takes to be important, such as “respect” or “autonomy” – what does it feel like to be treated with respect, and how does that make a difference in how satisfied I am with care or how willing I am to follow my doctor’s recommendations?
Beach and her colleagues’ study brings this out quite clearly I think, and offers an interesting analysis of the phenomenon of respect.They suggest that in patients’ encounters with health care “respect” has several dimensions: the more or less familiar ones that we refer to as respect or persons and respect for autonomy – i.e., acknowledging and acting in ways that pay attention to patients’ intrinsic value (i.e., dignity); acknowledging and acting in ways that pay attention to their capacities (to think and reason, to feel and suffer).And a broader, vaguer, “thicker” sense of respect that includes acknowledging patients’ presence and paying attention to their wholeness.This last reminds me, in some ways, of work I was involved in at the HastingsCenter some years ago on the “relational” dimension of patient-clinician interactions in cancer care.
They offered some further questions that could be studied profitably to deepen our understanding of what it means to respect patients:
Are there important attitudes or behaviors that are part of respect for persons but aren’t part of respect for autonomy?One example would be understanding more about presence.
Which, if any, of those attitudes or behaviors would be morally obligatory for clinicians?
Why might being treated with dignity have been more important for minority respondents than for white respondents?
The paper on which this presentation was based is under review – and I for one am looking forward to seeing it in print.Mary Catherine has promised to let me know when it comes out, and I’ll pass that information on.
Dr. Berkowitz:
Thank you, Dr. Crigger for your informative summary.
Now, I’ll discuss a session I attended.The session was entitled “Regulating Innovative Surgery: Results of a National Survey Among Surgeons”.
The session highlighted the fact that the line between clinical innovation and human experimentation is difficult to delineate.A study by Drs. Reitsma and Moreno from the Center for Biomedical Ethics at the University of Virginia attempted to examine this ethical issue of innovative surgery more closely.Recognizing that there are clear regulations and standards for human subjects research and human testing of drugs and devices but that there is NOT clear guidance pertaining to innovative surgery, define when innovation surgery is research, and assess surgeons’ knowledge and attitudes about current clinical research oversight.It tried to answer difficult questions such as: what are acceptable variations among surgical techniques, and what innovative techniques require prior IRB approval or specific written informed consent from the patient.
In the study, almost 2000 surgeons from a wide range of specialties were selected nationwide from the American Board of Medical Specialists members and surveyed with a 50% response rate.Responding to clinical scenarios, the respondents characterized the activities along a spectrum ranging from most likely research to clearly routine practice variation.For example, 97% of respondents rated “planned experimentation on a group of patients” as research and 92% of respondents rated “introducing small novel modifications during standard operations” as routine clinical practice.Less consensus was evident for such scenarios as a creative colleague finds new ways to modify standard procedures every time he operates that was rated by 60% of respondents as surgical research, and “spontaneously performing a major departure from a well established technique” was rated by roughly half of the respondents as research.
Interestingly, several characteristics of the scenarios influenced the ratings.For instance, most surgeons felt that the amount of risk that the innovation carried with it was important in whether or not they felt it was research.Similarly, innovations with unknown outcomes were likely to be rated as research as were procedures that differed from standard care, were performed to test a hypothesis, or whose outcomes were evaluated formally or published.In general, innovations that were performed spontaneously, or were felt to be a necessary adaptation of the procedure for a particular patient, or were planned to be evaluated informally were rated as more routine variations on clinical practice.